Experiences of sexual and reproductive health screening and counseling in the clinical setting among adolescents and young adults with rheumatic disease.
Huynh B, Ott M, Tarvin S • Pediatric rheumatology online journal • 2025
Adolescents and young adults with rheumatic disease report low levels of sexual and reproductive health screening and counseling by their rheumatologist, yet report these topics are important and want to discuss them, with notable gaps in teratogenicity knowledge identified.
Key Findings
Results
Rates of sexual and reproductive health screening and counseling by rheumatologists were low across the study population.
108 participants completed the one-time online survey recruited from pediatric rheumatology clinics at a Midwest tertiary care program.
Participants were ages 14-23 years and assigned female at birth.
Pregnancy prevention and emergency contraception counseling by rheumatologists were uncommon.
Counseling rates were not associated with teratogen use or sexual activity status.
Results
Among adolescents and young adults on teratogens, only half reported being screened for sexual activity or counseled on teratogenicity or pregnancy prevention.
36% of participants used a teratogen.
Only approximately 50% of teratogen users reported screening for sexual activity or counseling on teratogenicity.
Gaps in pregnancy prevention and emergency contraception counseling remained even when accounting for counseling by other providers.
Knowledge of medication teratogenicity was low among participants.
Results
24% of participants reported ever having had sex.
Sample consisted of 108 AYAs ages 14-23 years assigned female at birth with rheumatic disease.
Sexual activity rate was not associated with receipt of pregnancy prevention or emergency contraception counseling from rheumatologists.
Participants represented a range of rheumatic diseases.
Results
Adolescents and young adults reported sexual and reproductive health topics as highly important and expressed a preference for receiving this information from their rheumatologist.
AYAs reported sexual and reproductive health topics were of high importance.
Many participants reported recent concerns related to sexual and reproductive health.
Participants preferred to receive information from their rheumatologist.
Most agreed it is important to talk to their rheumatologist regarding these topics.
Results
Knowledge of medication teratogenicity was low among study participants.
36% of participants used a teratogen.
Low teratogenicity knowledge was identified as a gap even among those using teratogenic medications.
Only half of teratogen users reported receiving counseling on teratogenicity from their rheumatologist.
What This Means
This research suggests that young people (ages 14-23) with rheumatic diseases are not receiving adequate sexual and reproductive health counseling from their rheumatology providers, even when they are taking medications that can cause serious birth defects (called teratogens). In this study of 108 young females seen at a pediatric rheumatology clinic, only about one-third were using potentially harmful-to-pregnancy medications, but among those patients, only about half reported being asked about sexual activity or counseled about the risks of their medications during pregnancy. Counseling about pregnancy prevention and emergency contraception was rare and did not depend on whether patients were sexually active or on teratogens.
Despite receiving little counseling, participants said these topics were very important to them, many had recent concerns about sexual and reproductive health, and most said they wanted to discuss these issues with their rheumatologist specifically. This mismatch between what patients want and what they are receiving points to a significant gap in care.
This research suggests that rheumatology clinics serving young patients need to improve how they routinely discuss sexual and reproductive health, particularly around the risks of medications that can harm a developing fetus. Better communication and education in clinical settings could help young people with rheumatic disease make more informed decisions about their health and family planning.
Huynh B, Ott M, Tarvin S. (2025). Experiences of sexual and reproductive health screening and counseling in the clinical setting among adolescents and young adults with rheumatic disease.. Pediatric rheumatology online journal. https://doi.org/10.1186/s12969-025-01056-9